Stage 3b Colon Cancer with FOLFOX Treatment 12 vs. 6

steveIA

I have completed 3 FOLFOX treatments with most of the expected side effects. Mouth sores, nose sores and bleeding, rash on neck and arms, diarrhea, and overall tired and weakness. My goal at this time is to make it through 6 treatments and then discuss with doctor about quitting chemotherapy. Has anyone discussed this with their doctor and what was the outcome. I am really struggling with the quality of life as I go through the chemotherapy treatment, and I am not sure the 6 months lost during the chemotherapy is worth is at 74 years old.

bibliophile

I was diagnosed in 2023 at 48yo and started with 6 rounds of CAPEOX (which is the 5FU with oral capecitabine instead of the infusion). I had successful surgery so the chemo was just adjuvant and they only ordered 6 rounds. That said, it didn't get rid of everything, and it sounds like I didn't have as many side effects as you. I'm here to just talk if you ever need anything.

PTiger

Hi, steveIA. You don't mention what stage the cancer is, or if there are other factors. Without knowing more, here's a study that addresses your general question: https://pmc.ncbi.nlm.nih.gov/articles/PMC4980863/

However, that particular study is from 2016. This one is more recent, from 2024: https://pmc.ncbi.nlm.nih.gov/articles/PMC11093490/

I had a major allergic reaction (difficulty breathing) to the oxaliplatin on my 2nd cycle and had to fight my onco to remove that drug from the chemo. By cycle 10, I had decided to stop, based on studies like the ones I posted here. I had to fight him on that also. If you do your research and are firm in your desire to stop at 6 cycles, do not let the doctor pressure you into continuing.

My view is a little jaundiced here as there has never been any "discussing" w/my onco; he is extremely dismissive of any questions or ideas that I have. I'm actually in the process of switching care to another healthcare system b/c I'm just not willing to be bullied and disrespected by this guy any more. Please forgive me if some of my feelings spilled over.

I was 63 when diagnosed, so am a little closer to you in age, for what that's worth.

steveIA

The header for my post states my colon cancer stage as 3B. The information supplied looks interesting, thanks.

My team with TMC in Tucson does not seem to push back much on my stopping after treatment #6. They did mention that there are good studies that say 8 is an optimum number. Thanks for the information. I am not doing as well after treatment #4, so I believe number 6 might be my last. Next infusion is on 1-5-26, and if possible the last one will be on 1-19-26.

PTiger

My apologies, I guess I didn't read the header carefully, steve. I'm glad to hear that your care team is willing to respect your wishes. My onco did say that 8 cycles of oxaliplatin were supposedly needed, whether or not the entire 12 cycles of the total cocktail were given or not. I researched this and found that 6-8 were indeed needed. HOWEVER—what he wasn't telling me was that the oxaliplatin only adds about 5-8% to the overall efficacy of the chemo. When I asked him about that, he confirmed that it was true. Since oxaliplatin is the big side effect generator in FOLFOX chemo, maybe you could see about just dropping that specific drug and continuing on the other two. That's what I did, since I had the allergic reaction. I don't know if that would make sense for you or not.

steveIA

Thanks for the additional info, I will discuss with my care team next Monday during infusion #5. Because I had extremely bad mouth sores on the first treatment they have eliminated some of the drugs I receive at the infusion and only give them to me with the pump I go home with for 46 hours.

SnapDragon2

Stay hydrated! Don't be shy to ask for fluids to help you feel better.

steveIA

Update. Less than a week until infusion #6, cold sensitivity is increasing, hard to walk the dogs in the morning at 45 degrees F, even with a winter coat and gloves. My platelets count was low on the last blood test and I believe they will be lower this time as nose bleeds are taking longer to stop. The oncologist wants me to try for 8 and I am going try, but I am re-evaluating my decision after each treatment. Thanks for the suggestion on fluids, I have already received 1 dose of just fluids as my blood pressure was 95 over 55. I don't think I ever drank so much water, 4-5 16 oz bottles per day, 1 coffee( use to be 2-3), and the occasional pop at room temperature. After the last treatment it was hard to drink room temperature water, so I had a lot of tea for 1-2 days.

PTiger

The temperature sensitivity is tough. When I had my allergic reaction after the second cycle, it was brought on by drinking room temperature water. I was at home alone and it was pretty damn scary. For probably at least a month afterwards, even breathing 60° air was too cool and I could feel my throat starting to close up again, learned to make sure to bring a scarf or neck gaiter with me so I could cover my mouth and nose.

I also insisted that my oncologist prescribe me an EpiPen, as I had to work through my chemo in order to keep my health insurance and my job was as a lab courier, so I spent my entire day out on the road. For that month, I was terrified that I would have a recurrence while I was in the middle of nowhere. It was not a very good time in my life.

Please be careful when you are out with your dogs so that if you have a reaction, you are not alone and someplace other than your home.

steveIA

https://csn.cancer.org/discussion/comment/1725788#Comment_1725788

Thanks for the advice, my wife and I normally walk the dogs together, but lately she has been handling the morning walks.

bibliophile

Thanks for the update. Wearing a scarf over my nose and mouth helped with dog-walking, and a friend gave me these great electric hand-warmers that her husband had used during chemo for outside in general. For dog-walking, though, the gel-packs that can slip into your gloves might help. My boys used them for football and they aren't too expensive, though they can add up. The good news is that the contact cold sensitivity went away really fast after the last infusion of oxaliplatin for me. But until then, tea is great. I did a LOT of peppermint tea because it settled my stomach, too. Hang in there! It was good to hear from you!

steveIA

https://csn.cancer.org/discussion/comment/1725790#Comment_1725790

Good advise, I will see who has the gel hand warmers in Tucson, probably not a high sales item here.

SnapDragon2

https://csn.cancer.org/discussion/comment/1725787#Comment_1725787

Don't know your location but oysters and liverwurst might be good friends to you as both are loaded with all the good stuff the body needs. also, when you have time check out jackkruseforum. He is a retired neurosurgeon and has many thesis on cancer. It's worth researching.